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Miscarriage/pregnancy loss

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Recurrent Miscarriage Support Thread 25 - tests, treatment and trying again

999 replies

Marchgirl · 07/06/2015 19:08

Tea, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so hold on to your hats!
Previous thread here

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8
Jady77 · 10/06/2015 12:16

For Coventry Leah? You can call as soon as you think you've ovulated or they can do it based on your cycle day. E.g.i went CD 22 knowing my cycle is about 26 days. They like to get you in about a week after ovulation to ensure the lining is thick enough for the scratch, but before AF arrives. They'll always fit you in.

Justonemoretime · 10/06/2015 12:19

Excellent news, Bootles! Grin Grin Grin
I'm a GoT addict, as disturbing as it is... also recently discovered Bluestone 42 on iPlayer, and enjoyed that. Last night dh and i watched Birthday on Sky Arts and enjoyed reliving the trauma of an emergency c-section and poorly baby in intensive care... bit traumatic, but it helped us talk about Scott's birth. We are possibly both either really well adjusted, or psychopaths... Shock

Sunandrainbow · 10/06/2015 12:26

bootles - am all smiles for you. Great news. Here's to a quick next 2.5 weeks!!!

girliesaints · 10/06/2015 12:31

1.5 hours late but finally spoken to GP. Took all of three mins for him to agree to refer me back to rmc clinic for an appointment I already have. Really annoying to go through exercise to satisfy NHS paperwork but there you go!

mrsdiddlydoo · 10/06/2015 12:33

Great news bootles Smile enjoy the small moment of reassurance. I've a good feeling about this one.

bootles · 10/06/2015 12:52

Thanks all.

cloud that sounds like a programme to avoid for now!

just probably a good way to work through the trauma of scott's birth and shows a healthy relationship. Glad you didn't see it before he was born though.

girlie hope that gp gets stuff sorted for you.

So this love island thing..presumably they have totally unhinged people on it who cant see that they just have to play the game and then get 50k??

What about the great british bake off, is that coming back?...and what is goT?

bootles · 10/06/2015 12:58

Cross posts..

Glad that's sorted girlie

Yes a minutes a reassurance is about it mrsd ! How are you doing?

Brummiegirl15 · 10/06/2015 13:04

Love Island is Totally unhinged batshit crazy like the feb AN thread

Basically they know what they have to do - so they are all playing the game and slagging each other off behind one another backs

Marchgirl · 10/06/2015 13:10

Glad your referral had finally been sorted girlie. What a palaver!

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texta · 10/06/2015 13:10

snoopy i saw wobenzym mentioned a bunch to help with thin uterine lining/light periods, scarring and blocked tubes. It's supposed to help with any scarring in the uterus. But there's also other strange sounding things like caster packs where you run caster oil on your belly to help break down scar tissue and is aimed at ladies who've had an ectopic. i din't realise it was related to immunes so it must be a super enzyme!

leah1984 just to add that for Coventry you email Kerri (Kerri.Geraghty -at- uhcw.nhs.uk) who manages the coventry diary when you get a positive OPK and she books you in within 10 days from that. They run the consultancy on Monday and Friday afternoons. You need to have had two AFs before going, to avoid abnormal results. It was a really fab experience. Apparently Prof Brosens used to work at St Marys!

GoT is game of thrones! I've only read the first two books, the third one kinda killed me (wah, too many characters!)...

But speaking of disturbing telly...i watched the Horizon episode on RMC called "Waiting for a heartbeat" on Sunday (on youtube) and bloody cried my eyes out. It's about the st mary's clinic (where i've been referred and am unhappy with). They profile four ladies with recurrent miscarriage. Got angry at the v polished Prof Regan talking about formal testing of treaments - which is such BS! i'm so much more aligned with the Dr Beers way of thinking if something works, let's give it to people now instead of doing a formal large scale trial and creating more mcs! My DH used to work in pharmas and research and this is a biq question that gets debated a lot he seemed to think the general research community thought along the lines of Dr beers and was shocked to hear otherwise. Dr Raj was testing out steriods for immune disorders then for a sweet girl who'd had 6 mcs...and then i realised the show was from 2004! i wonder what happened and why they don't prescribe steriods now? anyway sorry ending rant now...

sebsmummy1 · 10/06/2015 13:11

I've just had a phone call from my local hospital asking me to come in and see the consultant tomorrow morning!!

Minnie74 · 10/06/2015 13:15

Yay! Great news bootles hope the next couple of weeks whizz by.

girlie so annoying that you have to go through all the hassle but glad you're finally being referred properly.

just sounds like a good way to talk about the stresses you might have still had about little Scott's birth. How is everything going now you're home?

leah like jady said they always get you in, I think even if it means they have a really busy clinic. I rang on day 12 and was seen on day 19. I ummed and ahed about going but I'm really glad I did.

I love crappy TV but Dh hates it so I only get to watch it if he's out. I do sneak in real housewives sometimes though. He's been away for 3 nights so I've watched some pretty trashy stuff! He's a GoT fan so I guess I watch that. Very envious of the perfect breasted women on it! Orange is the new black is back soon- love that!

Feeling a bit less fed up about the baby bomb today. cheesy you're right if I thought would I want to swap lives, no I definitely wouldn't. She has some major health decisions to make in the future and her and Dh work long hours so it's not all roses there either. I sent her an extra message to say congrats and that I appreciated her thinking of me. It is, in the end, my issue not theirs. I figure I'll just talk about where I am on the journey as much as they do and they'll have to put up with me!

Marchgirl · 10/06/2015 13:16

Well that's a turn up for the books sebs. Are you ready for them?

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Minnie74 · 10/06/2015 13:19

sebs that's really positive! Hope they get their finger out and prescribe the drugs you want. I'm so hoping this is the one for you. Our histories are so similar- I feel like if it works for you, it can work for me too!

Frecklefire · 10/06/2015 13:23

Ha ha ha brummie** you enjoy your trash tv whilst you can, because once baba comes along the only thing uou'll be watching for the next 5 years is cebebees, as once they finally go to sleep you're too tired for the box in the corner even (wicked old crone cackle...!)

Leah**, ahh yes, welcome to tge 'hyperfertile' club! What a cruel joke, eh? I doubt my uterus could tell the difference between a good egg and an argos catalogue!

sebsmummy1 · 10/06/2015 13:34

No I'm not ready for them at all!!

Minnie I always felt the same, that our stories were so similar. God I hope I can give you hope Star

girliesaints · 10/06/2015 13:34

Sebs, glad the hospital are being supportive x

Freckle- made me laugh your comment about a good egg or a Argos catalogue. Only good thing is you can take back rubbish to Argos, can't once you're pregnant.. Darn it!

sebsmummy1 · 10/06/2015 13:37

Freckle you are so right, kids TV was a novelty at first, now I just want to put my head in a noose.

I also got DP's and my genetic testing results through the post and we have both been declared 'normal'. That's a turn up for the books!! Wink

cloudjumper · 10/06/2015 13:43

Oooh, sebs that's great! Suddenly it all kicks into motion!

Minnie Glad to hear you are feeling a bit more composed today. Babybombs from close friends/groups are the hardest. I went through a phase where all my friends from my baby group were announcing their second, and I am now more or less the last one. I remember feeling so jealous and so guilty at the same time when the babies were born. Do what you need to do - and if that means going on low contact, that's totally OK.

texta I'm afraid I disagree with you - formal testing of new treatments is absolutely necessary and required, how on earth would you find out otherwise if a) something really works, and it's not just a fluke and b) is actually safe to use?
There are so many potential treatments out there, and sadly, many people (like all of us!) are so desperate to try anything that might have a minute chance of working, but that is so dangerous.
Finding anything that is safe in pregnancy is particularly difficult because it is immensely tricky to set up clinical studies with pregnant women!
The reason why they are still not routinely prescribing steroids is that there are still very few solid data that they actually work in pregnancy and provide real benefits to a majority of patients. Costs play a big role as well, sadly - and steroids aren't cheap either. And they are only useful to a few - the majority of rmc'ers does not have immune issues.
The hard truth is that no one (government or pharma industry) wants to spend lots of money developing drugs that are only useful for a small number of people.

Sadly, the whole process of determining the efficacy, safety and cost-effectiveness of new treatments take a very long time, on average you are looking at about 10 years from discovery of a drug to it making it to the market. Of course there are flaws in the system, but overall, it is in our best interest.
Sorry for the rant - I used to work in cancer drug development, and always got asked when we'll have the cure for cancer...

Snoopysimaginaryfriend · 10/06/2015 13:58

Great news bootles!

girlie did your SIL have any success with the promise trial? I can't believe we are only now doing trials on some medications that have been around for years. Prof Q has been looking NK cells for more than fifteen years and she's an nhs doctor but still the nhs refuses to acknowledge she and a few others might be onto something Angry rant over haha

texta I bought it after seeing they had run a trial in Germany where the used wobenzym to treat women with immunological problems and rmc. Out of 144 77% had a successful pregnancy the next time. I know it's only a small study but every little helps right.

Quick question, so it's been nearly three weeks since my gp sent a referral to the rmc clinic and I haven't heard anything. How long should I wait before chasing? I've already gone private to Dr s because I'm in an impatient person but I would like the nhs to acknowledge me as I've read reports that some women have success just with extra tlc. I've read a lot of reports recently Blush

longestlurkerever · 10/06/2015 14:04

Hello everyone! Thanks for the new thread. Just popping in to say a quick hurrah for Bootles' good scan. Hang on in there lovely!

All good here. Even got some sleep last night! Imagine it was a one off fluke but I will take what I can get. Have been a bit of a hormonal mess over dd1 suddenly worried I have turned her world upside down but am over that now. She doesn't need her every whim instantly catered to to be happy and at the moment is taking things mostly in her stride. Bit disobedient but that's nothing new!

Thanks for all the lovely warm words. Keep the good news coming!

texta · 10/06/2015 14:07

I understand all your arguments cloud I just get emotional when thinking about this! Dr beers started using steroids to treat immunes in the 70s. In France and italy (and commonly in the states) women are routinely given progesterone after MC#2 to support their third attempt. Sometimes I think iris the NHS and cost factor that holds us back here in the UK. But clearly I'm an expat used to paying for healthcare (beyond the 40% tax contribution) so come from a different thinking? My DH explained to me that in a blind clinical trials,if the results show an overwhelming positive from the drug, then it's unethical to keep people on the placebo treatment. But when I asked about this at St Mary's they totally shut me down and went back to the large scale blind test logic. When I think about all those bubs with disabilities who could've been helped by their mothers taking folic acid in the 80s & 90s after it was discovered in the early 80s it breaks my heart but also kills me that now I'm part of that demographic... Such an emotional and illogical rant, sorry. I'm looking forward to the PROMISE trial results at the same time

texta · 10/06/2015 14:13

Thanks snoopy that sounds v interesting! Will look into it this arvo when procrastinating more deadlines...Smile

My gp stuffed up my rmc referral On choose and book system, so def recommend following up. The delay was at the gp office end. The GP can actually book you in when you're there for real time spot but my gp office doesn't do it that day. My St Mary's referral took three weeks from gp appt to request letter to receiving the letter from St Mary's (for appt in 13 weeks after letter received date!)

Marchgirl · 10/06/2015 14:21

For those who know the cbeebies programme 'let's play', I have one of the songs going round in my head on repeat. It's the one that goes "let it be me; let it be me; I really really really really hope that it's me". Heard it at the weekend and now it won't stop. Quite apt though!

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longestlurkerever · 10/06/2015 14:26

I know it March. Smile I hope it is you! On GoT, we don't have sky either but signed up to a three month trial of now tv specially to watch it!